A new bipartisan committee’s working group will gather on Capitol Hill throughout the coming months to find ways to improve electronic health records, according to Senate health committee chairman Lamar Alexander (R-Tenn.) and ranking member Patty Murray (D-Wash.).

The group will work to find five or six ways to “make the failed promise of electronic health records something that physicians and providers look forward to instead of something they endure,” Murray said in an announcement.

All members of the Senate health committee are invited to be a part of the working group. Staff meetings begin this week, with participation from health IT professionals, industry experts and government agencies.

The working group’s goals include the following:

Help providers improve quality of care and patient safety.

Facilitate interoperability between EHR vendors.

Empower patients to engage in their own care through access to their health data.

Protect privacy and security of health information.

The working group isn’t the only way Alexander and Murray are pushing for change when it comes to EHRs.

IBM is taking its Watson artificial-intelligence technology into health care in a big way with industry partners, a pair of acquisitions and an ambitious agenda.

The initial three industry partners are Apple, Johnson & Johnson and Medtronic. On Monday afternoon, after the close of stock trading, IBM also announced it would buy two start-ups: Explorys, a spin-off from the Cleveland Clinic whose data on 50 million patients is used to spot patterns in diseases, treatments and outcomes; and Phytel, a Dallas maker of software to manage patient care and reduce readmission rates to hospitals.

The IBM plan, put simply, is that its Watson technology will be a cloud-based service that taps vast stores of health data and delivers tailored insights to hospitals, physicians, insurers, researchers and potentially even individual patients.

“We’re going to enable personalized health care on a huge scale,” said John E. Kelly, a senior vice president who oversees IBM’s research labs and new initiatives.

To date, IBM has done some individual projects using Watson technology with leading medical centers, including Memorial Sloan Kettering Cancer Center in New York, the University of Texas MD Anderson Cancer Center in Houston and the Cleveland Clinic. But the creation of the Watson Health unit, Mr. Kelly said, is an effort to apply the technology to the mainstream of health care.

The Watson Health announcement is also the latest in flurry of initiatives IBM has announced this year that include new corporate partnerships as well as moves in cloud computing, data analytics and Watson. They are evidence that IBM is intent on investing for future growth, and showing it is doing so, in a year when its financial performance is likely to lag.

IBM has reported disappointing earnings recently, and Virginia M. Rometty, IBM’s chief executive, has told industry analysts and investors that 2015 would be a transition year in which new growth businesses like Watson did not yet overcome the profit erosion in some of its traditional hardware and software products.

IBM’s broad vision of combining and analyzing health data from varied sources to improve care has been around for decades. But the company and its partners say that technology, economics and policy changes are coming together to improve the odds of making the IBM venture a workable reality. They point to improvements in artificial intelligence, low-cost cloud computing and health policy that will reward keeping patients healthy instead of the fee-for-service model in which more treatments and procedures mean more revenue.

“Forces in health care are aligning as never before,” said Sandra E. Peterson, a group worldwide chairman at Johnson & Johnson in charge of information technology and new wellness programs. “It could be a unique moment and something like this could have real legs.”

A focus of the Johnson & Johnson partnership with IBM will be improving patient care before and after knee and hip replacements. The company will apply Watson technology to data sources ranging from patient records to digital fitness devices and smartphone applications, which can monitor movement and vital signs. “It will allow us to do much more integrated, personalized care,” Ms. Peterson said.

Medtronic, a large medical equipment maker, wants to use data intelligently to treat diabetes patients beyond providing them with its glucose monitors and insulin pumps. Medtronic devices are already digital and produce a lot of data, but the company plans to use the Watson software to spot patients trending toward trouble and automatically adjust insulin doses and send alerts to care providers and the patients themselves.

“The goal is dynamic, personalized care plans so you can delay or stop the progression of diabetes,” said Hooman Hakami, executive vice president in charge of Medtronic’s diabetes group.

Apple is increasingly a major supplier of health sensors, from iPhone apps to the Apple Watch. Its recently introduced HealthKit and ResearchKit software make it easier for applications and researchers to harvest health information from millions of owners of Apple products, with their permission. That data can now be plugged into Watson. “We want to be the analytics brains behind HealthKit and ResearchKit,” Mr. Kelly said.

The IBM initiative raises questions on how data is handled and about privacy. Mr. Kelly said the data scrutinized by Watson will typically be anonymized and often be read by Watson but not removed from hospital or health company data centers. “There will be no big, centralized database in the sky,” Mr. Kelly said.

Even critics of health information technology say the IBM effort holds promise. “If that future when all this stuff works is going to become real, then having some of the key players come together is the only way it’s going to happen,” said Dr. Robert M. Wachter, a professor at the University of California, San Francisco medical school and author of “The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age.” “This could be a pretty important step along the way.”

President Barack Obama’s Precision Medicine initiative hinges on gathering data from millions of individuals, but there are challenges the healthcare industry will face when it comes to collecting that information, says Niam Yaraghi, a fellow in the Brookings Institution’s Center for Technology Innovation.

Interoperability and security are two issues plaguing the industry, which also will play a role in Obama’s initiative, the aim of which is to increase the use of personalized information in healthcare

“To succeed, the Precision Medicine initiative has to either overcome the lack of interoperability problem in the nation’s health IT system or to find a way around it,” he writes.

For now, those working on the project should get access to what medical records they can and then work with providers and vendors on gaining access to future records, Yaraghi says.

When it comes to privacy for precision medicine, problems the administration will face include setting up secure technologies and privacy regulations surrounding the project so that information cannot be accessed by malicious actors. In addition, when researchers begin to analyze data, they may uncover information patients do not want shared or known.

To ensure safety of information privacy, audits should be conducted by third parties, Yaraghi says. And if a data breach occurs, a patient’s participation in the study should be canceled and the patient should get financial compensation.

“The Precision Medicine initiative is a ‘Big Hairy Audacious Goal’ with exciting promises and priceless implications,” he writes. “[H]owever, to believe in its future success, it should first propose a plan to resolve the above mentioned patient privacy concerns and health IT challenges.”

A physician once told me that “your genes load the gun. Your lifestyle pulls the trigger.”

We were talking about how genetics play a role in the likelihood of a disease manifesting itself – and how the way we live also influences that likelihood. And it’s getting easier and faster for doctors and scientists to precisely understand which genes influence which diseases, and by how much.

This improved access and understanding of the genome, though, brings up challenges to the notion of ownership, consent, and privacy. Should a patient ask her siblings, parents and grandparents for permission to reveal genetic information? How much of a person’s genome should be tested, disclosed, or archived, per analysis?

Parental contribution only tells part of the story about our personal genome. We know that germ line genes – genes you are born with and persist over generations – can mutate and cause cancer, or diseases like cystic fibrosis and sickle cell anemia. And we can even test for a few hundred of the germ line’s Mendelian inherited diseases, such as Huntington’s, because they’re caused by a single gene. New York State, for example, tests every newborn child for about 40 genetic diseases that otherwise may not be identified at birth, but that may cause illness, mental retardation, or even death if not treated in the first weeks or months of life. Still other mutations are somatic; the result of changes to your genetics after birth. This is where a predisposition for certain cancers or diseases, from hypertension to Type-2 diabetes, interact with lifestyle.

It’s also where the issue of privacy gets nuanced.

The National Institutes of Health considers germ line information re-identifiable. It’s been shown that anonymous genetic data can, indeed, still identify individuals by connecting it with publicly available information.1 Genetic data describing somatic mutations is considered non-identifiable and therefore disclosed and disseminated with lesser concerns.

That identifiability is due to the fact that there is nothing more unique than your genome. It’s the difference between knowing someone’s cholesterol number, versus the genetic elements that influenced that number. The latter is more specific and closer to uniqueness, hence a greater aid at identifying that person. And it might also identify members of that person’s family.

Protecting your genes

My team studies these aspects of genomics research and privacy in our work on precision oncology, looking at treatment options based on somatic mutations that drive cancer. And 10 years ago, during our Genographic Project, we realized the definition of genetic privacy had to be broadened to the workplace. The policies established for that project later laid the first-of-its-kind legislative ground work for the 2008 Genetic Information Nondiscrimination Act (GINA).

As identifying genes, and processing entire genomes gets better and faster – and we discover more connections between genes and diseases – we will need new kinds of privacy protection. One area I’m exploring is around the fact that identifiability is not a binary attribute. Gene commonality ranges from the individually unique to across the populace. We need to ask: what is a more sophisticated metric for the identifiability of our genetic data?

Register for the Computer History Museum’s Techonomy BIO on March 25, where Dr. Royyuru will discuss “Who Owns Your Genetic Data?” and “The Internet of (Bio)Things.”

The five Republican senators who previously called for a “reboot” of the meaningful use program are now looking at the Office of the National Coordinator for Health IT’s broader efforts and citing a lack of interoperability among the reasons that the stimulus has not worked to their satisfaction.

“We have been candid about the key reason for the lackluster performance of this stimulus program: the lack of progress toward interoperability,” GOP Sens. John Thune of South Dakota, Lamar Alexander of Tennessee, Pat Roberts of Kansas, Richard Burr of North Carolina and Mike Enzi of Wyoming wrote in a Health Affairs article. “Countless electronic health record vendors, hospital leaders, physicians, researchers, and thought leaders have told us time and again that interoperability is necessary to achieve the promise of a more efficient health system for patients, providers, and taxpayers.”

The senators added that in the six years since the HITECH Act was passed, there has been inconclusive evidence that the legislation is working to achieve its goals of increasing efficiency, reducing costs, and improving care quality.

Their article comes as ONC is currently accepting public comments on the plan, dubbed Connecting Health and Care for the Nation: A Shared Nationwide Interoperability Roadmap Draft Version 1.0, and that comments period will be open until April 3, 2015.

ONC chief Karen DeSalvo, MD, has called the interoperability roadmap and the accompanying Federal Health IT Strategic plan a new horizon for “HIT beyond EHRs” and “policy levers beyond meaningful use.”

DeSalvo has also explained that several actions steps will be needed to reach nationwide interoperability, as Healthcare IT News Editor at large Bernie Monegain reported, and the work will progress along three pathways: standards, incentives to motivate the use of those standards, and a trusted environment for collecting and sharing health information.

ONC has been criticized for the 10-year duration during which it intends to work toward not just interoperable EHRs but the promise of a learning health system built on top of digitized infrastructure — with at least one hospital CIO, Paul Merrywell of Mountain States Health Alliance, likening the timeframe to how long it took to land a man on the moon.

And while Merrywell said last summer during an HIT Policy Committee meeting that he is encouraged by ONC’s interoperability roadmap, he added that “we’re never going to get to interoperability without standards that can be universally applied.”

In addition to standards, the senators called for much more detail than ONC has thus far provided.

“Instead of offering specific objectives, deadlines, and action items, ONC’s roadmap falls short on the nitty-gritty technology specifics that vendors and providers need when developing IT products,” the senators wrote. “We are left with many outstanding questions about how to achieve interoperability and how to address the cost, oversight, privacy, and sustainability of the meaningful use program.”

U.S. Surgeon General Vice Admiral Vivek H. Murthy meets with Dr. Jonathan Woodson, assistant secretary of Defense for Health Affairs, at the Pentagon on March 11, 2015, to discuss the Military Health System’s critical role in support of the National Health Strategy.

eaders of the Military Health System met with the newly confirmed U.S. Surgeon General at the Pentagon on March 11. Dr. Jonathan Woodson, assistant secretary of Defense for Health Affairs, and Air Force Lt. Gen. Douglas Robb, director of the Defense Health Agency, discussed military health and the MHS’ critical role in support of the National Health Strategy in their first meeting with Vice Admiral Vivek H. Murthy since his confirmation by the U.S. Senate in December 2014.

“Our partnership with the Public Health Service has been instrumental in helping the Department and the Military Health System achieve its mission,” said Woodson. “Public Health Service officers have worked side-by-side with us in our military hospitals and clinics, in our laboratories, in support of our global health mission, and as part of the medical team serving all of our beneficiaries. One of the most prominent areas where we have collaborated is on implementation of health prevention and wellness initiatives. I look forward to continuing to work in close partnership with Admiral Murthy to promote health and healthy behaviors for our force and all of our beneficiaries.”

The meeting gave the leaders the important opportunity to discuss the Military Health System as a strategic asset in support of national security objectives, and the important role DoD plays in supporting the National Health Strategy, especially in areas such as reducing obesity and tobacco use.

“Our military medical personnel are all members of the larger federal team focused on improving the health and wellness of the entire country,” said Robb. “I am privileged to have Public Health Service officers working with me in the Defense Health Agency on a number of critical health matters. We’re one team engaged in one fight. It was a great opportunity to show Admiral Murthy everything we have to offer, and to express our appreciation for the talented people the Public Health Service shares with us.”

The Patient-Centered Outcomes Research Institute (PCORI) is operating in accordance with requirements of the Affordable Care Act, but the lack of a standard data model poses a hindrance to plans to develop a “network of networks” to further comparative effectiveness research (CER), according to a report from the Government Accountability Office.

Yet while the planned National Patient-Centered Clinical Research Network (PCORnet) is believed to have the potential to significantly improve the ability to conduct CER, it faces various challenges.

Plans call for PCORnet to combine the resources of 11 Clinical Data Research Networks (CDRNs), such as the National Pediatric Learning Health System from the Children’s Hospital of Philadelphia, and 18 Patient-Powered Research Networks (PPRNs) formed by patient groups, such as the Epilepsy Foundation’s Collaborative Patient-Centered Rare Epilepsy Network, FierceHealthIT previously reported.

PCORI officials and other stakeholders, however, “expect that the process of mapping data to the common data model will be slow and resource intensive because of the lack of standardization among existing data maintained by CDRNs and PPRNs, such as data from electronic health records,” according to the report.

A common data model and the requirement that networks hire the expertise to address standardization are expected to work out this issue, the report says. However, uncertainty about costs and sustainability of the network remains an issue, and each CDRN and PPRN is expected to be required to provide a sustainability plan.

The completeness of data is another issue. PCORI officials said that they are collaborating with other relevant organizations, including state Medicaid offices and private health insurers, to identify how CDRNs could link their EHR data to claims data, which would improve data completeness.

While some early results are expected to be announced in 2017, full evaluation is not expected until around 2020, the report says. Research findings will be publicly available 90 days after researchers submit their final reports, as required by law.